Topic: New to all this....and SO LOST!
I am a 37 y/o woman with no significant past health history aside from an elective gastric bypass with removal of my gall bladder 15 years ago. 3 weeks ago (after suffering severe abdominal pain for about a month), I FINALLY found a doctor who decided to look a little deeper into my situation, rather than assume I was seeking pain medications. I was diagnosed with Cholangiocarcinoma. It is Intrahepatic. (I still don't know if this is good or bad....seems to depend on the article you read). AND my tumor is 20x12x22cm within my liver. There is no lymph node involvement, and according to the remainder of vast tests performed, I am otherwise healthy.
When I was presented with my diagnosis, I was also informed that I have 2-14 months to live. I was told it was not curable, it was not a candidate for radiation or surgical options, and the only option I had was to partake in Chemotherapy as "palliative care".
I live in Arkansas, there are no large cancer centers in the state, so I cant help be very skeptical of this prognosis and statement of such limited treatments. I have plans to go to MD Anderson in Houston, but this has been put off due to insurance purposes. Now the insurance issues are resolved, but now I have to wait until my current oncologist completes her first stage of treatment and reaches a point of re-evaluation.
Here are some of my major questions at this time:
1. I hear this is an extremely rare cancer and even more rare due to my age of 37. Any suggestions on what to do during the waiting time to get to MDA?
2. I have read so much about supplements and diets, Im lost on this also. Seems if I followed all their advice, I would be limited to water and asparagus (but im not supposed to lose weight, remember lol). I would love any input on what has worked for others.
3. My Chemo is Gemzar and Cisplatin. I have had very little side affects of the chemo, thankfully, with the exception of having notable issue with concentration, memory, irritability, and both gross and fine motor skills (I stumble around a lot, and Ive noticed my hand writing is shaky and runs down hill). Is this what they call "chemo brain"? and does it really kick in after only 2 treatments?
4. How do you relax and get this off your mind for just a little while? Ive started exercising lightly, and trying to learn meditation. I do the meditation attempts at night mostly mainly because the music at least is a help to relax and otherwise I am wide awake most of the night with thoughts running thru my head over and over again.
5. ANY tips you wish you knew at this point is welcomed. ANYTHING to help me find a path that hopefully leads to survival...but at the very least...one of serenity and understanding of what I have, what to expect, etc.
Thanks, in advance, for your time and input! Carla